By Jos Weale
A former hairdresser’s joy over her miracle pregnancy turned to horror when having the baby gave her an ultra-rare incurable stomach condition – that could kill her at any moment.
After having the baby she believed she would never have, Roxanne Burton, 26, developed the incredibly rare Superior Mesenteric Artery Syndrome (SMAS) – a condition that occurs when a main artery blocks part of the small intestine.
It took perplexed doctors nine months to discover that the problems were being caused by her intestines which had ‘crossed over’ when her internal organs moved back into place after birth.
Roxanne is effectively housebound and can now only be fed through a permanent feeding tube and lost seven stones in the first three months of the illness in January 2015.
The young mum says she could never have imagined giving birth to her dream baby would lead to a routine of medication, hospital stays and tube feeding that is essential to keep her alive.
Mum-of-one Roxanne, who claims doctors believed she had anorexia when she initially went to hospital, has also penned a box full of letters to loved ones if the worst should happen.
Roxanne, from Dartford, said: “There’s nothing they can do. All they can do is try to keep me comfortable with palliative care.
“There is no operation I can have, and the illness could kill me.
“I look like a completely different person, and I’m constantly in and out of hospital because of infections.
“When I learned that my condition was caused through pregnancy I was in shock, I couldn’t believe it.
“I was told when my intestines were moving back into place after being moved for the baby they have crossed over, and that’s what caused it.
“But learning that my pregnancy was the reason for my illness doesn’t change things for us – particularly because I thought I would never have children.
“If I could go back I would still go through it all again. My boy is my world.”
Precancerous stomach cysts at 19 left Roxanne with a ‘very slim’ chance of ever being able have children, and so she and partner Alex Cozens were amazed to discover she was pregnant in 2014.
The former hairdresser gave birth to miracle baby Freddie Cozens on November 3 2014 after a tough pregnancy, and says she was recovering well.
But in January 2015 Roxanne claims she was struck by what she thought was a sickness bug, and began vomiting several times a day.
Vomiting persistently and unable to hold down any food, bubbly then-size 14, and 14-stone new mum dropped to seven stone in just three months, and was admitted to Darent Valley Hospital in Dartford.
Roxanne said: “I was absolutely fine – eating, things were totally normal. I went to bed one night and when I woke up I started to be sick – I just couldn’t keep anything down.
“In hospital I felt like I was being accused of being anorexic. They thought I was doing it to myself and not eating, but I just couldn’t eat.”
After numerous tests, x-rays and an operation for polycystic ovaries, Roxanne was eventually diagnosed with SMAS, also known as Wilkie syndrome, in September 2015 and says doctors have told her ‘nothing can be done’ to cure her due to the severity of the blockage.
Roxanne claims learning about her condition initially led her to try to commit suicide in the first year of her diagnosis.
But the brave mum says she is now fully focused on her family, with Freddie, now three, and fiancée Alex, 27, acting as her full-time carer – and together they’re trying to raise awareness of her condition.
Roxanne said: “Freddie’s amazing, he’s a very caring boy – just like his dad.
“He’s really young but he understands it in his own way. He calls my peg Jack and my feeding tube Jill, and he says Jill is a hero.
“On a good day I’ll be able to get dressed and take my boy out to the park, but if I do go out then I’ll be laid up in bed for two or three days after that.
“I can only manage some small amounts of liquid foods, but I’ll be sick with anything else.
“It’s really hard when I have to go into hospital and leave Freddie – he gets really upset.
“I do spend a lot of time thinking about how ill I am and I worry in the night that I might not wake up the next day. I do get quite anxious, but I’ve got amazing support.
“I have a box with letters already written for friends and family in case that happens.
“But I have Freddie and Alex to live for, they are what get me through.”
Roxanne says she has finally accepted that she now has to deal with the illness for the rest of her life, and is now petitioning the government for more research into SMAS.
Roxanne said: “I think there could be other mums out there with this condition and who don’t know they have it but are feeling as if it’s their fault.
“I would just like them to put more research into the syndrome.
“I do want another baby, but I really don’t think I would be able to have another one. I’d be putting myself under unnecessary strain – the doctors would not recommend it.
“It would be selfish to have another one, I wouldn’t be able to do it.
“It makes Freddie even more special.”
A Darent Valley Hospital spokesman said: “This type of digestive condition is extremely rare and difficult to diagnose.
“We are pleased that Roxanne is now receiving the appropriate treatment to manage her condition as effectively as possible.”
FACT BOX: SUPERIOR MESENTERIC ARTERY SYNDROME (SMAS) (Info from US medical sites)
SMAS is a very rare digestive condition that occurs when the superior mesenteric artery that supplies blood to the small intestine crosses over a part of the small intestine and causes a blockage.
The disorder caused vomiting of food that can only be partially digested due to the blockage and lead to severe weight loss and stomach pains.
The most severe cases will require the patient to receive tube feeding and intravenous nutritional support, with only small amounts of liquid foods able to be consumed.